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Rejecting hormone therapy



  • lillyishere
    lillyishere Member Posts: 773

    roz27, how big was cancer that was removed, what grade, and what Oncotype? I was diagnosed with ILC myself and I'm 10 years younger than you. Like you, I also had a healthy and young body and mind but I am taking the medication because I am scared of cancer coming back.

  • bennybear
    bennybear Member Posts: 245

    appreciate all the food for thought on this thread. I just had another mastectomy for IDC with neuroendocrine features. Previously I had a lumpectomy with rads, then a mastectomy with some Aromasin and Exemestane that I had to stop for side effects and bone loss. I later had a stress fracture in my femur, perhaps from the alendrondrate used to treat the bone loss.

    In between mastectomies I had a complete hysterectomy for early stage uterine cancer. new MO wants me to take tamoxifen. I am super concerned as this was unexpected and I’m not sure it’s a safe choice, I will discuss this at our next meeting when I also will get my oncotype score. Anyone else take tamoxifen after having uterine cancer?

  • salamandra
    salamandra Member Posts: 736

    I saw this and your new thread and I hope you can find folks with specific experience, but I just wanted to say to never be afraid to get a second opinion. Even if your first doctor is 100% correct, sometimes having two people explain things each in their own way can make all the difference. And hopefully your doctor is 100% correct, but they are only human too.

    If it's the same one then they are not a specialist, and they should be consulting with specialists. My breast cancer oncologist consulted with a gynecological oncologist when I pushed her on my birth control questions - a good doctor will want to use the best resources available to them.

    If it's different ones and this one is a breast cancer specialist, then they too should be in consultation with whoever treated you for the uterine cancer.

    As far as I know, there is more medical data on tamoxifen than on pretty much any other breast cancer hormonal treatment. It's one of the oldest out there with decades of studies and clinical experience - more than the AIs you were on before.

    Based on all that data, your doctors may have good reason to believe that it's safe and effective for you. If so, they should be able to share it with you in a way that helps you have confidence as well. Just know though, some truly great doctors are not always the greatest communicators/educators, and if you think you have one of those, it could be well worth it to do the extra work to find another practitioner who can help. That person might be a second opinion doctor, but it could also be a resident or a nurse practitioner or a social worker within that same doctor's care center.

    Good luck!

  • aprilgirl1
    aprilgirl1 Member Posts: 766
    edited June 2023

    At 44 years old in 2008 I was dx stage 1 node negative IDC, clear margins from lumpectomy + rads, oncotype of 23 and 6 months of CMF chemo. PLUS 7 years of femara. I was told the treatment and 7 years femara gave me a recurrence % of around 8%.

    I was taken off of femara (after 7 years which was longer than the standard of care) as my top rated NCI cancer ctr told me my risk of bone loss was greater than my risk of recurrence. I have no family history and do not have BRCA.

    Imagine my surprise when 11 years later, I had a recurrence, stage IV. It was discovered fairly early but there is no early stage IV distinction, really. I have been on treatment for 3.5 years and have had no evidence of disease for almost 3 of those years so I am doing well. I have been told by many oncologists that this should not have happened, but here I am.

    Stage IV, even when you are doing well on treatment is a terrible reality.

    My reality and my opinion is the oncologists don't really know everything and I do believe 30% of early stage will have a recurrence and not a local recurrence. I did all I could to reduce my risk and still ended up stage IV. Plenty of people have reasons to not take an Aromatase Inhibitor but I would caution you all to seek a second opinion. I sure wish I had stayed on femara past 10 years but didn't seek a second opinion because with node negative disease and the treatment I completed, I felt like 7 years of femara was plenty as I had remained cancer free.

  • mandy23
    mandy23 Member Posts: 111

    aprilgirl1 -

    You're right. You did everything you could and unfortunately it recurred. Even if you had stayed on the Femara longer, it still may have happened.

    I was on Femara with my 1st dx for 8 years. After 19 years, I had a new primary. Although I was fortunate it was a new primary, it was more aggressive than my 1st time. I said to my MO, "Maybe I never should have stopped the Femara." She said then it might have shown up as triple negative.

    Unfortunately, there is STILL so much unknown about bc and I think a lot of it is that there are too many variables. When I hear things like "Walk for the cure", I always wonder….Cure for which type of bc?

    Sorry about your mets, but good that you are NED and know that you did all you could and likely nothing else that you did would have changed things.

  • twilijay
    twilijay Member Posts: 6

    I finished up my radiation a few weeks back and my onco wanted me to get an injection for ovarian suppression and start on Verzenio. I have been struggling with the idea of hormonal therapy after seeing the side effects and I definitely feel QOL is important but I don't want to become metastatic either. I decided to go with Tamoxifen and have been on it for a couple of weeks. It hasn't been too bad but the hot flashes are not fun. I started on Verzenio and I am already feeling nauseated after day 2. I had a pcr to chemo and my onco said she would be ok if I want to skip the V which I'm feeling like I might do.

    I looked into fermented wheat germ extract as an alternative which seemed like some promising benefits that NIH documented, but it also looked like there are some estrogen effects which doesn't sound like it would be good if your tumor is hormone positive. I do often wonder if the damage is already done and am I just making myself miserable until the next time. I agree this is all a crapshoot and you just don't know what will happen.

  • oldladyblue
    oldladyblue Member Posts: 302

    It has been since Jun 22 or so that I went off of the AI, and basically all medicines, to focus on feeling better and quality of life. All of the side effects of the AI went away, plus the side effects of the cancer treatments. I am doing a strict diet and lifestyle regimen, and have stopped second guessing my decision to stop anti-estrogen treatments back then. I think it is MOST important to get as much medical information and statistics as you can, talk to your family, and make your OWN decision. I was a wicked witch emotionally on the AI, and in pain daily, so I decided (with my family's help) that coming off was best for me. Of course, the future is unknown, and time will tell.

  • fighter00
    fighter00 Member Posts: 31

    hello @threetree . I’m very sorry for your new diagnosis. You’re not the first one taking Al and get

    I took anastrozole+verzenio for 13 months and now just diagnosed stage 4 with bone Mets multifocal.

  • threetree
    threetree Member Posts: 1,361

    Fighter00 - Can't believe I saw your post here. This thread isn't very active and my post must have been about a year ago. I'll never know for sure of course just why I went metastatic, but I was considered "locally advanced" at diagnosis and I understand that usually means you will become metastatic one way or another. They were real slow getting me into some stage 4 drugs (post Covid slow down?) and I finally complained. By late April and into May I started with Faslodex (another anti estrogen drug) and Verzenio and have been stable so far - knock on wood.

    There are a lot of stage 4 drugs out there and many seem to do well for quite some time, so there is definitely reason for hope and giving it your best shot. From what I'm aware of, none of these stage 4 drugs are easy, but there are some modest things that can help a bit and some work arounds, so again lots of reasons to go for it with these treatments. I'm just so sorry that this has to you and I wish you nothing but all the luck in the world!

  • fighter00
    fighter00 Member Posts: 31

    @threetree Thank you. Mine in 2022 was locally advanced but I don’t really it should metatased so fast. Tell me how are you doing??